Author Archives: Kimberly Zapert

I No Longer Feel Guilty About Going to the ER

One frustrating aspect of Ehlers-Danlos syndrome (EDS) is the number of systems it can affect and the multiple disorders it can mimic. I say “can” because everyone experiences EDS differently due to genetic penetrance and expressivity. Reduced penetrance (not developing features of the disorder) and variable expressivity (the different signs…

Your Health Is Not Defined by a Diagnosis

After recently honoring Rare Disease Day on Feb. 28, I’m contemplating the obvious: A person is not defined by a diagnosis. This usually means they don’t allow a condition to limit their enjoyment of life or their accomplishments. But that’s not what I’m talking about — not directly, anyway. I’m…

Here’s How I Am Coping with the Corona Crisis

Too often while pursuing answers to health questions, people with an Ehlers-Danlos syndrome are told that their physical symptoms must be caused by stress, or perhaps they’re psychosomatic, because no obvious explanations are available. I related my own frustration about this to my physical therapist several years ago while he…

Distinguishing Between My Identity and My Roles in Life

Change happens. I have had many roles in my life, including being a daughter, wife, and mother. I’ve also been a student, artisan, neighbor, patient, and advocate. You probably have had similar experiences. Roles have come, and roles have gone. It’s part of the natural waxing and waning of life.

Here’s How I Made the Holiday Season More Enjoyable

Usually, negative feelings are rooted in unmet expectations. Examining those expectations and deciding if they are reasonable can be particularly helpful when life changes. I recently adjusted my expectations for the holiday season, and now that we have made it through and are settling into the new year, I can…